Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

Jess, I've messaged you and shabooly back about fb, as I need you to friend me instead (security settings must be too high). Once you friend me I will add you. You are both most welcome to join us on fb

Hello, I hope it's okay for me to join this lovely thread. Im so sorry for everyone's losses.

I'm really looking for some support as I go through the aftermath of my second missed miscarriage.

Here are my stats:
Me: I'm 34
DH: 38
Had healthy DD in Jan 2014

TTC #2 took 3 months: silent miscarriage at 10.5 weeks after hearing heartbeat. Baby measured only 8w+4d. Had MVA under local in Aug 2015

TTC #3 took 4 months: silent miscarriage at 10.5 weeks after hearing heartbeat. Baby measured 8w+5d. Had ERPC at St Thomas Feb 2016

Can't believe that everything has happened again and find it very hard that it's just 'bad luck' twice in a row, especially when babies seem to have made it up to the same point each time. The only thing that got me through the first miscarriage was that lightening couldn't strike twice and this miscarriage has compounded all my previous feelings and I have no idea how to move forward.

We have paid to have the genetics tested from the ERPC and I have been in touch with Coventry to ask about referring. It's the waiting that I will find so very hard and just trying to remain positive.

I'm also due to go back to work next week and am just dreading the thought of that. Mostly because everyone is really nice and will want to know where I've been.... But I don't really want to share that I've miscarried again with them. As it was awkward last time as No one knew what to say and just avoided asking how I was.

Sorry I'm not feeling very positive

Hoping I will be a bit of support for others in time.

Xx

Hello all, hope it's OK to join.

As above, sorry for everyone's losses.

I'm 39, DH is 39, we're both feeling old.

I've had:

Two mcs in 2002 and 2003, both 5-6 weeks (not with DH).

With DH:
Two early MCs in 2008-9, both probably 5 weeks, both accidents.
Last August, MC at 5-6 weeks.
Last September-November, molar pregnancy, discovered at 10 weeks, ERPC at 12 weeks.
This year, MC at 5 weeks (last week - started the day after the first midwife visit ).

Feeling pretty shite from the last mc, and the general pattern. Wondering if it's something going wrong with gastrulation, not that there's anything they could do about it if it is. Have been referred for bloods and back to gynae consultant at the local hospital. Am not in the UK, so all the stuff like NK cells testing probably won't be available here.

Hi fourleaclover and magnificat and welcome to the thread- I am sorry you found yourselves here and for all your losses. I am a newbie too but have found great support through the ladies on this group.

Magnificat, whereabouts do you live? NK cells testing and other reproductive immunology testing are done elsewhere in Europe and in the US as far as I know. I have also been recommended to read "Is your body baby friendly" by a number of women in MN- haven't done it yet but will most certainly get to it soon.
Reading your history of mcs, I think you would definitely benefit from thorough tests that include immune, blood clotting and endocrinology conditions.
I think there's a document attached in the first page of this thread that includes most top mc centres and what tests they offer so a good place to check what tests you could be asking for from your local clinic.

Fourleaf, it sounds too much of a coincidence to lose both pregnancies at the same point of gestation. I am also a firm believer of following your gut instinct with these things and it's really positive you're taking steps to look into what is happening.
I hear that Coventry and its team has an excellent reputation amongst all the ladies in this group so getting a referral there is a very good start.
Xxx

Thanks Annaif for your advice and replying. Really sorry that you find yourself here too. The thread has gone very quiet these days so I'm hoping I can be added to the fb page too.

Yesterday I went to see Dr Rai at St Mary's to talk through what tests etc can be carried out for determining cause of miscarriages. He was really lovely but I guess I was expecting to walk out feeling reassured or something but I don't feel any different even though I know that I've started the process for testing.

I feel that given my age (34) and the fact that I can get pregnant relatively quickly that St Mary's were not too concerned and I just don't want to get through all tests and then be told there is nothing wrong and to roll the dice and try again.

Must stay positive!

Forgot to say that I too have read the "is your body, baby friendly" book and found it a really interesting read, especially having read Lesley Regans book in miscarriage. The body friendly book made a lot of sense in my head and definitely made me question the whole TLC approach and findings by Regan. It's quite clear that they were not fans of each other's work!

Annaif, sounds like you are getting closer to finding out some answers and I really hope that your appointment goes well with Dr S.

Xx

Hi fourleafclover82

I have also been seen by Dr Rai at St Mary's :)
I went through the process of getting of all their testing done last year, following my 2 back to back losses. I have to say, I was reassured at the time that I was in good hands- they were thorough and the whole process took less time than I thought. I also read Proff Regan's book last year as part of my research into what the hell's going on. The I read "When a baby dies" which upset me so deeply that I decided to give the related literature a break!

The reality is that, apart from thyroid antibodies St Mary's team didn't find anything and didn't give me any answers to my late or subsequent losses. When discharged last May, I was advised by Dr Quinn that "we should really get on with trying again straight away" (I was 39 then) but that the next pregnancy may not necessarily be the successful one
DEF not what you want to hear when you're being sent off.

I then got on the TABLET trial which was sadly short lived- as I miscarried for the third time 6 months in the trial, last Nov'.... So he was right in a way as I'm sure they've seen it all before with women trying till they get lucky- as if it's all just a numbers game.

What really pissed me off though was the fact that I miscarried third time around under their care and although I was in and out of the TABLET trial, they didn't check my thyroid after the third miscarriage and instead I had to go privately this January and discovered that my thyroid function had slumped, with a diagnosis of "an autoimmune compensated hypothyroidism" and my antibodies have also soared (trebled in only 4 months time)

So now Dr S is focusing on stabilizing my thyroid first and looking at what other auto immune issues I may have (of course St Mary's don't even want to entertain the idea of uNKs)... So in hindsight and given my age I should have probably not wasted those 6 months being on the trial and doing nothing but ttc naturally, I should have probably asked for a second opinion, from a clinic/specialist who deals with autoimmune conditions (Shehata, Coventry, ARCG or Lister).

Good luck with it all and keep me posted, I know the thread has gone quiet as apparently a lot of the ladies here are already pg again! Which is a great sign :) But I am on it daily so will be nice to hear from you (and others) too

Welcome fourleaf and magnificat, but sorry that you find yourselves here. fourleaf, I've added you to the fb group as well. Let me know if you want to join magnificat.
anna, thanks for continuing to chat on here. I don't get on as often as i used to to pick up messages.

magnificat, spivs like you've really been through the mill. What country are you in? As anna says, there may well be something in your country with regard to nk cells testing, as it's fairly well known test now (despite the nhs refusing to acknowledge it as valid yet)

*sounds, not spivs (?!)

Hello. And hello to the other women on the thread. CONFUSED about what to do! I posted recently about a successful meeting with our fertility consultant who agreed clexane without any tests. The medical director of the clinic has now said no and that we need to pay for the tests! Even though the consultant who works for the NHS and the clinic on the side would prescribe it via the NHS! Can't see him via NHS now as a conflict of interest. Thinking about contacting Coventry as testing via our clinic would be £2000. As part of the testing, they test for Killer Cells via a blood test. At Coventry, are cells taken from the womb and tested or via a blood test?

Coventry is uterine NK, so it's a uterine biopsy rather than the blood test. How annoying that they don't agree on the heparin!
Coventry used to advise heparin as standard, whether high uNK or not, but more recently they haven't been prescribing it as much. I think there is conflicting evidence about its efficacy in terms of the cytoprotective effect (which is what it was prescribed for by them, rather than for its anti clotting properties)

Thank you March. It's so hard to know what to do. Compared to other very brave women on here I've only had two MMCs. I don't know if we should just try again and risk the FET or plump for Coventry. Just don't want to keep wasting time. Should have either had a four week old baby by now or be 16 weeks pregnant. Why! Why! Why!

Please don't ever say you've 'only' had two fraggle. Each and every one is heartbreaking and no one should have to go through this, so do try to avoid rating your grief against anyone else's, it only leads to guilt.

I completely understand not wanting to wait. I seriously considered coventry after mc3 and decided against it because i truly believed everything might be ok and i was so impatient. Also because of the cost and travelling involved in getting there and bizarrely I think I wanted a 'last resort' option.
I subsequently had mc4 and have berated myself ever since for not going sooner, because that made up my mind to go, but i then had to wait again (have to be 2 cycles clear of mc). Of course, I'm a little biased as I got a high nk diagnosis, which made me realise it was all worthwhile waiting to go, and I should have gone after mc3. Perhaps I wouldn't have felt quite so angry with myself if I'd tested normal, but i really wish I'd just thrown everything at it.
It's a very hard decision to make, esp for you on an ivf journey as timing is much more crucial. X

Oh fraggle. I totally get how you feel and we seem to have had both of our losses at similar times too. I'm currently in process of starting to get blood tests etc and depending on how they come back I know it would be very tempting to just roll the dice and try again. I have told myself that I will wait a few more months though in order to get tested up at Coventry. I know it seems hard to wait another month when you just want to start trying again... But hopefully having more info will be worth it in the end.

MarchGirl- do we know why they have stopped the heparin at Coventry? That was one of the main reasons I wanted to go there! I managed to get my Gp onboard for prescribing the meds if Coventry agreed on the hep/progesterone protocol. Now I'm thoroughly depressed that they don't. I heard that one of the trials found that progesterone wasn't effective but I hadn't heard of any trial saying that the heparin wasn't effective.

Thank you March and Four. It's so bloody tough! Four, have you been accepted at Coventry? March, your kind words and info really help. I'm planning to just think for a few days before deciding! X

Hi Fraggle. No need to be accepted at Coventry as it's just self referral and seems straight forward. Just phone on day of ovulation and then they book you in for the biopsy 7-10 days later. You need to wait 2 cycles after miscarriage though. good luck in your decision. Nothing is easy is it. X

fourleaf, Kazz was last to go to Coventry (last week) and was told something like that some recent research suggests heparin is not as effective as they thought. I don't think they've ruled it out completely, but not everyone gets it now. It's disappointing as I'd read a few positive research papers about it previously. Going to do a bit of reading this weekend if i get a chance and see if i can find what they've read.

hi again, lovely people. Hugs all round for those feeling their losses, feeling confused and bewildered, etc.

I got referred for blood tests, including what is known here as the "thrombophilia screen" (includes protein c&s, lupus anticoagulant, leiden factor V, ...). Path lab refused to do the tests as they have been told "no thrombophilia screens, too expensive" by the district health board. So now I need to get a haematologist to argue my case with the DHB administrators. So effectively I may as well just keep shagging DH and assume that I don't need heparin, uterine biopsy or steroids, cos even if I do, I doubt I'll be getting them any time soon.

incidentally no private clinics here- am at the arse end of the universe as far as healthcare goes. The local hospital has great people working in it, but its level of underfunding and administrative dysfunction makes the NHS look appealingly palatial and well-run.

also - not in the USA or Europe, so am too far away from places that do have this sort of testing (don't have the spare cash to hop on a plane and go to Coventry or I'd do it like a shot...)

It's all so confusing! I think I'm going to contact Coventry. Once you've been and had the tests how long does it take for results and did people have to pay privately for prescriptions or via GP? X

Just read the info and can see it takes four weeks for results. I've just emailed the clinic!!!

Just read the info and can see it takes four weeks for results. I've just emailed the clinic!!! Would still be interested to know how the treatment plan was embraced by GPs?! X

Just read the info and can see it takes four weeks for results. I've just emailed the clinic!!! Would still be interested to know how the treatment plan was embraced by GPs?! X

Just read the info and can see it takes four weeks for results. I've just emailed the clinic!!! Would still be interested to know how the treatment plan was embraced by GPs?! X